An Open Letter to Those That Walked Out of Our Lives After My Daughter’s Diagnosis

 

Dear Friends,

Well, I say friends but that’s no longer the case is it? There are still times I think about what used to be, all the amazing times we had and the memories that we made. The excitement of my pregnancy, the tears of joy and happiness when my daughter was born. How we used to love meeting up with you all, we all had babies around the same age. The first couple of years were amazing. We shared some great times. As our babies turned two it was becoming more obvious that my daughter, Eliza, was different somehow. You were all supportive and encouraging. “She’ll talk when she’s ready”, “Maybe she’s just shy” and similar phrases were offered as comfort and reassurance. Our twice weekly meetups continued as well as attending the same baby and toddler groups.

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Here she is, a few hours old.

Eliza failed her two-year check that is completed by the Health Visitor to make sure children are reaching the milestones for their expected age range. It was no surprise to me or all of you. Life carried on just fine until the day we all met at the park and I told you that Eliza had been referred to a Paediatrician and that autism had been mentioned as a possible diagnosis. Looking back, the silence and the looks were the start of what happened next but as I felt vulnerable and overwhelmed, I’d assumed you were all surprised by what I’d said. A few days later I tried to arrange a meetup in the park, the sun was out and it was a beautiful day. But you were all busy. I get it, life’s busy. After a few days I noticed the lack of phone calls or texts that used to happen frequently. Again, I tried to set up some play day fun, nobody replied.

One day, on walking home from town, I bumped in to two of you separately. You two changed our lives that day. Friend ‘A’, you asked if we were well as you’d not seen us at a couple of coffee mornings at ‘B’s house and would we be going to so and so’s party at the weekend. It was clear to me that we’d not been invited to a few things. In some ways I didn’t mind, I never expect to be invited to everything. But something about the way you looked at me suggested you knew more than you’d let out so far. As I walked home with a sleepy Eliza in her buggy I bumped in to you. Let’s call you friend ‘C’. You were the one full of sympathy. You were the one telling me how sorry you were that my child wasn’t normal. You did the head tilt to one side accompanied with the “awwww but she looks so normal doesn’t she”. I tried to explain that Eliza was normal thank you very much and that she was just different. Then you said the words that I’ve never forgotten to this day. With your hand on my shoulder, sympathetic eyes staring at me you said “Why don’t you adopt her out and get on with your life….. you can always have another baby”. I never replied to you. I didn’t know how. I felt like my heart stopped beating for a few moments, my breathing slowed as I tried to process your words. My daughter hadn’t even been diagnosed and people were leaving us and telling me to give her away. I remember just walking away from you and looking down at my beautiful child, wondering how anyone could even suggest what you did. After that day pretty much all invitations to meetups stopped coming. Eliza was no longer invited to birthday parties.

I’m going to Fast Forward seven years now and tell you a little of what you’ve missed out on.

  • Eliza is very academically able and excels in computers, English and Maths.
  • At 9 years old she reads at age 11-12 years.
  • She’s learnt to play a brass horn and piano recently and took part in a small concert in assembly.
  • At 9 years old, she was asked to be an ambassador for a clothing range that promotes Autism Awareness & Acceptance.
  • She can swim, run, ride a bike, roll down a hill and all the things your kids can do most likely.
  • Eliza has friends. She loves parties, going to the cinema and theatre. Despite anxiety and living in a judgemental world, she’s finding her place and loving life.
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Eliza age 9

There is so much more you’ve all missed out on and all because you were frightened by a word. Autism. It really isn’t a word to be feared you know. Eliza might be different to your children in some ways but she’s not less of a person because of her diagnosis. If you’d stuck around you’d see the incredible, intelligent, beautiful girl she is. You’d hear her terrible jokes and fall prey to her slightly sarcastic tainted sense of humour. She’d infect you with her big cheesy grin and giggles and she gives the best hugs ever. You’ve missed so much, and you hurt us deeply. I really hope since then that you’ve thought about it and explained what autism is to your children because the likeliness is there will be autistic kids in their classes at school. We’re living a great life without you. It’s just a shame you didn’t stick around to enjoy it with us. I used to feel so much pain when thinking back on those days. But that’s just wasted time in my mind and you don’t deserve to occupy that space any more.

From the friend you deserted & and her awesome daughter

 

***This blog was originally written for the Firefly Website and can be seen here: The letter on Firefly

 

 

 

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My fears for the future for my autistic daughter

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Every parent has fears about the future, it’s natural to worry about the unknown because we want to protect, guide and support our children as much as possible and for as long as possible and the future cannot be predicted. I have the same worries as most parents – finding the right schools, finding out she’s being bullied and a whole bunch of other things. When you have an autistic child, a whole new bunch of fears come in to the picture.

Eliza likes to chat about the future, she loves to be involved and it helps her anxiety if she can openly talk about things. We’ve already been talking that she’ll go to a new School one day as she outgrows her Primary setting. She’s ten this year so we’re talking High Schools as this coming September when it is EHCP review time, we’ll also start planning for the changes to come when she’s in her final year. Now we all know there are not enough schools, let alone schools that will be able to meet her needs. Hence, we’ve already been in contact with some and are hopeful they have space for her when transition time starts but it’s a worry that there won’t be one for her.

Every week I hear of services and therapies being cut back due to lack of money. Eliza’s current school provide pretty much all she needs including speech therapy, occupational therapy and they even helped us get on the SEN dentist treatment list. But it won’t always be this easy. What will be available for her when she’s ready to leave school? What services will still exist? We already know about the fight to move from DLA to PIP, they certainly don’t make it easy that’s for sure. I want Eliza to be as independent as possible, she has already told me she doesn’t want to live at home forever and she’d like to live in some kind of supported living arrangement. Again, there are nowhere near enough of these places. I’m hopeful that more will exist, or a suitable alternative.

My biggest fear is knowing that I’m not going to be here forever. I’m not immortal, I will die one day, and I want to make sure she’s had as much guidance, love and support as she can to help her take on this crazy world as an adult. She is strong, confident and intuitive but also vulnerable. Vulnerable to those that could take advantage of her kind nature. Vulnerable to those that could manipulate or bully her. Vulnerable to her own feelings, she’s an empath and feels extremely deeply so we often talk about this and come up with ways for her to help her control the strong emotions she feels, how to process and filter through them and most importantly, how to take a step back and allow her own well being and mental health time for calm and recovery.

She’s only ten this year, but Eliza’s already overcome so much and she’s aware of how much we have to fight for services, therapies, school placements, EHCP’s. She’s a confident and very academically able child, she understands more than most people assume. I will never stop encouraging her to have her own opinion and to stand up for what she believes in because one day she’ll be doing this without me.

 

*** This was written for the Firefly blog which can be found here: Fears for the future

Interview with the author of ‘UNDERDOGS’ – a novel with special needs heroes written by Chris Bonnello

For those that may not know you, tell us about yourself.

My name’s Chris, and I’m the writer behind Autistic Not Weird (http://autisticnotweird.com), diagnosed with Asperger Syndrome at the age of 25. After I left primary school teaching I launched my website to talk both personally and professionally about autism, and it’s taken off a bit better than expected! Three years on I’ve won three awards for my advocacy and given over fifty autism talks, some internationally (including at Sydney Opera House!). I’m also a special needs tutor, a Boys’ Brigade captain, an enormous chess geek and a soon-to-be-published novelist.

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Chris Bonnello

Can you explain why the title has been changed from Guerrillas to Underdogs?

It was a joint decision between myself and the publisher, because it’s far more suited to the themes of the book and its characters. Whereas Guerrillas simply means “we pick up guns and shoot them”, Underdogs alludes to the war their fighting (with odds ridiculously against them), the size and age of their army, and the characters themselves who have grown up being made to believe they’re inferior. And besides, who doesn’t love a good underdog story?

 

When did you start writing Underdogs and what inspired you to write it?

Underdogs has gone through a bunch of incarnations, but the very, very first draft was in 2010, back when it was named Guerrillas. I wanted to write the ultimate underdog story: a novel series where the good guys were almost mathematically certain to lose, but would fight anyway. Hilariously, writing the book was also a coping mechanism for my unemployment at the time, giving me something to do with my days. It was clearly never going to get published, but that wasn’t the point of it. And now it’s literally being published, with over 400 copies sold already.

 

Some of the characters are from Special Education. What made you decide to go with this amazing idea?

In 2014 I was working at a special school, and looked at Underdogs again. The thought of having the main characters being teenagers from a special school crossed my mind, and the more I thought about it the more I felt it absolutely had to happen. Not only would it be a unique idea in the dystopia field, but also there’d be major opportunities to discuss important topics. Underdogs would become a novel that would actually have something to say.

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There are some powerful messages/life lessons in the story. What do you hope readers will take away from the book?

I don’t want Underdogs to be too preachy: underneath everything else, it’s an intense action novel filled with loveable characters, and as a novel it should be seen that way. With that said, there are massive opportunities to be taken (and a lot of responsibility on my part) to make sure the reader is richer from the experience of reading. I want neurodiverse readers to experience a novel where they can identify with the main characters, and see people similar to them who go through massive challenges due to their conditions but do incredible things anyway. I want neurotypical readers to leave the book with a better understanding of teenagers with special needs: not just what makes them different, but also the largely unspoken common ground they have with other teenagers.

Finally, I want all the book’s readers to gain a little more insight into what happens when those defined by their weaknesses get a chance to play to their strengths.

 

What themes/genres does Underdogs fit?

Aside from the obvious young adult/dystopia genres, there’s an up and coming genre called “disability-lit”, which Underdogs is perhaps around the edges of.

As for themes… I’d say the big ones are the difficulties of being an underdog (both in the war sense and in the special needs sense, these characters have been raised to believe they’re “inferior” to those they’re fighting to save), and trying to be the best you can be when the world is not on your side.

 

Is there a certain age range the book is more suitable for?

I’d say “12+”, which obviously is an age range that includes adults. It has that Harry Potter/Hunger Games cross-age-range appeal, written for teenagers but adults are likely to love it just as much. Among its dozen or so beta readers, both teenagers and adults have been equally enthusiastic.

 

Underdogs is available in paperback and eBook once published. Is there any possibility of an audiobook version?

A lot of people have asked this. Unbound Publishing have told me that it’s rare that they do audiobooks, but they will if the book’s wildly successful and proves that there’s a level of demand for it!

 

Who is your favourite character in Underdogs and why?

I’d say it’s a tie between Jack, a 17-year-old lad with Asperger’s who understands computers better than people, and Dr McCormick who leads the Underdogs as a calm, guiding force who loves building people. Jack is a loyal, honest (sometimes too honest) young man who helps his friends put things into perspective, and a nice dry sense of humour. McCormick is like Dumbledore and Uncle Iroh from Avatar: The Last Airbender rolled into one, except a mathematics lecturer.

Kate comes close behind though. She suffers massively from anxiety but makes a point of confronting absolutely everything that makes her nervous. She is by far the bravest character in the whole Underdogs universe.

 

Will there be more Underdogs books to follow?

Oh yes. I’m on book three already! Obviously, the reception to book one will determine whether the publisher will except book two, but going by Underdogs’ performance so far I think we can afford to be optimistic.

 

As the author, tell everyone why you think the world needs a book like Underdogs.

Because representation matters. Meaningful, accurate representation of neurodiversity in fiction is so rare, and most neurodiverse characters in novels (or movies) are either tokenistic or based on stereotypes. Underdogs, if it performs well, may be a key part in the battle for representation as well as being a heart-pounding action novel in its own right.

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There are some incredible rewards with the purchase of the book including having your name printed in the book and meeting the author himself. Underdogs can be ordered here: Underdogs

Another New Year

How did 2019 arrive so fast? In the blink of an eye it is here and everything is back to ‘normal’ after a very festive period. The first week of January was stolen from us by the winter sickness bug, both children as its victims. Eliza coped really well considering she hates feeling and being sick. In fact, she’s got the patient thing perfected by really playing on it to her advantage. “Mummy, can you bring me a teddy…… can you get me a drink please……. I need ice cream…… because I’m poorly”. Each request met with a cheeky grin when she felt a little better. I’m glad the bug has gone away. I’m very glad it never grabbed me as well! A day of cleaning every single surface and floor made me feel a whole lot better after a week of germs.

School has been back for one week already. Just like that, a brand new term started. Eliza came home today with two awards. One for excellent reading and the other for completing 10 metres front crawl in swimming. She’s had a great first week back although the first few early mornings were a struggle and she actually napped on the journey to school. She has homework to do this weekend, write an essay about her Christmas holidays. Eliza is not a fan of written work, her fine motor skills are poor so she struggles but she loves Christmas, I mean REALLY LOVES it, so she’s happy to write all about it. We might be in January, we might have taken the tree down and all decorations, but she’s still singing Christmas songs and watching Christmas films and asking how many sleeps until Santa comes again. Once we get to the summer holidays (wow they seem so far away in July and August) she knows her favourite times are about to start – Halloween, Bonfire Night & the whole run up to Christmas. First though, she has a birthday to look forward to. In March she enters the double figures…… 10!!! She’s so ready, I’m so not! How is she growing up so fast?

2019 will be whatever it is. I’ve entered it with a fresh mind, no expectations or demands but a hopeful and positive attitude. This time last year I was in a dark place, needing therapy and medication to help me get through everything. A year later and for the first time in years I actually feel like me and I’m remembering who I am. It’s refreshing so I’m taking that with me this year. Working on me a bit more as I’m an expert at neglecting my own needs and putting other first. I have some amazing friends and family behind me so feeling very loved and lucky.

Enjoy your year, whatever it brings you. The past is called the past for a reason, don’t waste too much time pondering what should be left behind. No matter what the years brings, chase it and embrace it. Forward is the way, always forward.

This has been a blog prompt from the great ‘Finish the sentence Friday’ group based around ‘OMG, It’s January!’ and hosted by the fabulous Finding Ninee and Undiagnosed but okay

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Are you tired of characters with special needs being tokenised and based on stereotypes, or being the victims rather than the heroes? This novel will interest you!

I recently did an interview with the fabulous Chris Bonnello who runs the popular website and Facebook page ‘Autistic Not Weird’. You can read that interview here: Chris’s Interview. The Pre-Order phase for the novel is still running until the second week of December so if you wanted to not only order the book, but grab some of the amazing rewards, (including having your name printed in the book or meeting the author) then now is the time to do it. If you know someone who may love a book like this that features heroes from special education with conditions including PDA, Autism and ADHD, please tell them about the book too. Thank you.

You can order the book here: Guerrillas order page.

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You can see Chris’s incredible autism advocacy at Autistic Not Weird

If anyone wishes to have the above poster image emailed to them so they can print it, email it to others etc then please send me a private message over at Living with Blooming Autism.

 

 

Interview with the author of Guerrillas – a novel with special needs heroes written by Chris Bonnello

I recently had the pleasure of interviewing Chris Bonnello who runs the very popular Facebook page Autistic Not Weird. Chris is a very close friend of mine, we met via our Facebook pages and he kindly added Eliza as one of the 150 children in his book What We Love Most About Life and now he’s about to become a published author of the novel ‘Guerrillas’. I’ve had the pleasure of reading the book already and it really is incredible. Action scenes that had me on the edge of my seat, some great humor and inspiring messages inside the story. Oh and at one point I swore at Chris for a certain scene that literally made my pulse race with anticipation! Don’t worry, no spoilers. Guerrillas is a book where the heroes are from Special Education with Autism, Anxiety, ADHD, Down Syndrome and PDA. I’ll add the link to where you can pre-order Guerrillas at the end of the interview.

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For those that may not know you, tell us about yourself.

My name’s Chris, and I’m the writer behind Autistic Not Weird (http://autisticnotweird.com), diagnosed with Asperger Syndrome at the age of 25. After I left primary school teaching I launched my website to talk both personally and professionally about autism, and it’s taken off a bit better than expected! Three years on I’ve won three awards for my advocacy and given over fifty autism talks, some internationally (including at Sydney Opera House!). I’m also a special needs tutor, a Boys’ Brigade captain, an enormous chess geek and a soon-to-be-published novelist.

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Chris Bonnello – Autism Advocate, Writer , Chess Geek… Also known as Captain Quirk!

 

When did you start writing Guerrillas and what inspired you to write it?

Guerrillas has gone through a bunch of incarnations, but the very, very first draft was in 2010. I wanted to write the ultimate underdog story: a novel series where the good guys were almost mathematically certain to lose, but would fight anyway. Hilariously, writing the book was also a coping mechanism for my unemployment at the time, giving me something to do with my days. It was clearly never going to get published, but that wasn’t the point of it. And now it’s literally being published, with over 350 copies sold already and we’re not even halfway through the pre-order phase!

Some of the characters are from Special Education. What made you decide to go with this amazing idea?

In 2014 I was working at a special school, and looked at Guerrillas again. The thought of having the main characters being teenagers from a special school crossed my mind, and the more I thought about it the more I felt it absolutely had to happen. Not only would it be a unique idea in the dystopia field, but also there’d be major opportunities to discuss important topics. Guerrillas would become a novel that would actually have something to say.

There are some powerful messages/life lessons in the story. What do you hope readers will take away from the book?

I don’t want Guerrillas to be too preachy: underneath everything else, it’s an intense action novel filled with loveable characters, and as a novel it should be seen that way. With that said, there are massive opportunities to be taken (and a lot of responsibility on my part) to make sure the reader is richer from the experience of reading. I want neurodiverse readers to experience a novel where they can identify with the main characters, and see people similar to them who go through massive challenges due to their conditions but do incredible things anyway. I want neurotypical readers to leave the book with a better understanding of teenagers with special needs: not just what makes them different, but also the largely unspoken common ground they have with other teenagers.

Finally, I want all the book’s readers to gain a little more insight into what happens when those defined by their weaknesses get a chance to play to their strengths.

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What themes/genres does Guerrillas fit?

Aside from the obvious young adult/dystopia genres, there’s an up and coming genre called “disability-lit”, which Guerrillas is perhaps around the edges of.

As for themes… I’d say the big ones are the difficulties of being an underdog (both in the war sense and in the special needs sense – these characters have been raised to believe they’re “inferior” to those they’re fighting to save), and trying to be the best you can be when the world is not on your side.

Is there a certain age range the book is more suitable for?

I’d say “12+”, which obviously is an age range that includes adults. It has that Harry Potter/Hunger Games cross-age-range appeal, written for teenagers but adults are likely to love it just as much. Among its dozen or so beta readers, both teenagers and adults have been equally enthusiastic.

Guerrillas is available in paperback and eBook once published. Is there any possibility of an audiobook version?

A lot of people have asked this. Unbound Publishing have told me that it’s rare that they do audiobooks, but they will if the book’s wildly successful and proves that there’s a level of demand for it!

Who is your favorite character in Guerrillas and why?

I’d say it’s a tie between Jack, a 17-year-old lad with Asperger’s who understands computers better than people, and Dr McCormick who leads the Guerrillas as a calm, guiding force who loves building people. Jack is a loyal, honest (sometimes too honest) young man who helps his friends put things into perspective, and a nice dry sense of humour. McCormick is like Dumbledore and Uncle Iroh from Avatar: The Last Airbender rolled into one, except a mathematics lecturer.

Kate comes close behind though. She suffers massively from anxiety but makes a point of confronting absolutely everything that makes her nervous. She is by far the bravest character in the whole Guerrillas universe.

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Will there be more Guerrillas books to follow?

Oh yes. I’m on book three already! Obviously, the reception to book one will determine whether the publisher will accept book two, but going by Guerrillas’ performance so far I think we can afford to be optimistic.

As the author, tell everyone why you think the world needs a book like Guerrillas.

Because representation matters. Meaningful, accurate representation of neurodiversity in fiction is so rare, and most neurodiverse characters in novels (or movies) are either tokenistic or based on stereotypes. Guerrillas, if it performs well, may be a key part in the battle for representation as well as being a heart-pounding action novel in its own right.

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If you want to, you can Pre-order Guerrillas here (It’s already over 100% funded but please don’t let that put you off, it can still be ordered).

***The first chapter of Guerrillas is available to read on the pre-order page too ***

There are a variety of order options available with exclusive rewards linked to the pre-orders including the chance to have your name (or someone else of your choice) in the book as a patron. We have a few copies coming, I’m putting one away for Eliza for when she’s ready in a couple of years time. She’s super excited that Chris is publishing a book. To those of you that order, I really hope you enjoy it as much as I did.

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Ten photo’s I just can’t delete from my phone

This week in ‘Finish the sentence Friday’, the prompt is ‘Share 10 photos from your phone’ so here they are (It took me a while to choose ten as I have hundreds saved on my phone!!). You’ll see there is no theme or pattern, my photo’s are as random as daily life.

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This is Rockingham Castle, about fifteen minutes drive from my house. Small but incredible. I’m a real History geek and I love visiting castles and historic buildings. I visited this one over summer during my 6 days of being child free, when the kids went away with their dad. The weather was incredible and I had the company of a friend I’ve known for more than 25 years.

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These two argue and fight as siblings do but they have a beautiful bond that sometimes I’m lucky enough to capture in a photo. Noah loves sitting with Eliza but even at the age of four, he understand and accepts that she doesn’t always cope with contact and she needs her space. They really do love and understand each other.

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Noah visiting one of our local Country Parks. We’d painted rocks with colourful pictures and uplifting quote on, and hid them for others to find on their walks. I love that time of year, when greenery is starting to show again but there are still crisp leaves on the ground. Warm enough to not need a huge coat but cool enough to get a hot chocolate in the cafe after.

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In June of this year I visited Scotland for the first time in my life. Edinburgh was amazing, I loved the Castle and the historic streets. I visited the cafe where J.K Rowling wrote Harry Potter when she was poor and not famous at all. I walked the streets that were supposedly the inspiration for Diagon Alley. I saw men playing bagpipes in kilts and a guy dressed as William Wallace. One of my favourite photo’s is the one above. It might not look like much but that building you can see in the distance was where Mary, Queen of Scots was kept prisoner many years ago. You can read about it here On the 2 May 1568 Mary, Queen of Scots escaped Lochleven castle. Yep, I love history.

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Eliza is always so happy to see Chris who runs Autistic Not Weird, he’s become a close friend of ours and we are lucky that we get to see him fairly often thanks to him living only one hour away. He is one of our very favourite humans. The frame they are holding was made by me. I love arts & crafts. I made one last year and again this year so I think I started some kind of birthday frame tradition! Eliza is so comfortable with Chris, confident enough to tease him (in a fun way) and she even has her own nicknames for him. He is a friendly, caring and fun guy that advocates so hard for autism awareness and acceptance. He’s also an incredible writer and I have had the privilege of reading most of his work to date. His first novel is going to be published very soon, you can check that out here (Yes shameless plug and no, I don’t care because I LOVE this book) Guerrillas by Chris Bonnello It’s a book full of Characters that are the heroes and they have various special/additional needs including autism, PDA, ADHD, anxiety and down syndrome.

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Back in January, Noah and I went with his nursery on a trip to London. We had an amazing time and visited The Natural History Museum and the Science Museum. A day filled of space rockets, pictures of the moon, dinosaurs, skeletons…. he had a great day. First time on a coach for him as well as first time in big, busy and huge London and he coped really well and wants to go back again another day.

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Back in 2016 I was able to see and walk through the carriages of the Hogwarts Express. I’m a huge Harry Potter fan so this was super exciting for me. It was the first time you could walk in to No.4 Privet drive too (And I did, and I was all emotional!!). I’ve been to the Warner Bros Studio Tours three times now, It’s time I booked visit number four…

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One of my favourite places to visit in London is The British Museum. I’m a Classical Studies student so this is where I get my geek full on lol. I can spend hours in the Roman section but the place you’ll see me the most is where the Ancient Egyptian statues and mummies are. There are so many amazing photo’s I could keep on my phone from the museum, but this is the one that I love. Who is she? She is Hathor and she’s always fascinated me for many years. Twelve years ago I beat anxiety and a fear of large amounts of water to get in a tiny wobbly boat and sail across to the Temple of Philae. Why? Because it’s linked to Hathor. As we touched land I cried (partly the relief that I could get out of the boat, mainly because I was actually standing there at the temple). “Hathor was the golden goddess who helped women to give birth, the dead to be reborn, and the cosmos to be renewed. This complex deity could function as the mother, consort, and daughter of the creator god”.

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This time last year I did a graffiti tour of London with a friend. She needed photographs for her photography degree and she wanted some company. We had a great day and very sore achy feet from covering miles and miles of London. I saw this on a wall next to some other posters and graffiti and just loved it. It speaks for itself really.

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I LOVE THIS PHOTO. Taken on Eliza’s 9th birthday earlier this year and with all three of us being a bit cheeky. I love it because it reminds me no matter how down I feel when depression kicks in, I have these two little humans that are my world. When my anxiety is taking control, I look at photo’s like these. These are my babies. I grew them. I raise them. I keep them safe. They are everything. We’ve been through so much yet look at us all.

 

This week’s prompt is hosted by Finding Ninee and Sporadically Yours